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  1. 3 points
    Priscilla

    Possibly PANDAS?

    Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
  2. 1 point
    MomWithOCDSon

    Disrespectful behavior

    I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations. I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever. I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-appropriate behaviors. But most behavior of that kind comes from a lack of self-control, irrespective of the genesis of the lack of control. Either his brain is physically impacted so he acts out, or his "mind" is emotionally impacted so he acts out, the results are the same. And maybe the same tactics are applicable for the behaviors, as well. "The Explosive Child" has some great strategies you could try, but as I recall, pretty much all of them suggest that you de-escalate any unpleasant exchanges by dis-engaging, taking a few minutes to calm down and dial everything back, and then re-engaging again in a calm, controlled tone of voice and body language to resolve the dispute. Seems to me that could work whether PANDAS or non-PANDAS. I personally think that pretty much ALL non-age-appropriate behaviors (meltdowns, tantrums, etc.) our kids may display during this illness is at least partially -- if not wholly -- attributable to the illness. But then again most "normal" kids will test their limits during the natural course of growing up, too. So, in your shoes, I might ask myself, "Is this behavior I could expect to see out of a 'normal' XX year old?" If the answer is "yes," then maybe you deal with it as you would with any kid behaving that way. But if the answer is "no," I think you still address it, but maybe with a little extra compassion and patience, adding into the discussion something along the lines of, "I know that you're feeling especially out of sorts right now while we get the inflammation in your brain and the other PANDAS stuff under control, but you have to know that speaking/acting that way is still unacceptable. Let's try and brainstorm some things you could try instead of yelling at me/your dad next time you feel this way." My son hated being told he was not acting his age when he'd meltdown over something pretty minor or lose his patience in 0.2 seconds during his PANDAS. But I've got to be honest; I didn't do it to be cruel, but I felt like it was somewhat important that I hold a mirror up for him because I didn't want him to dig a deeper and deeper hole for himself socially. I wanted him to have some outside perspective as to how his meltdowns looked to his peers in the hopes that it would give him some incentive to work with me on some of the "Explosive Child" strategies for dialing things down so that he could "save himself" in some of those outside world situations. It was tough, and we weren't always successful. But I do think it helped him maintain some perspective, especially when he got out of that intense moment and could look at things a little less emotionally. All the best to you!
  3. 1 point
    maryangela

    Disrespectful behavior

    I recommend the book, “The Explosive Child”. It’s not PANDAS specific, but it definitely can apply.
  4. 1 point
    I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years. Our son was diagnosed in 2010 or 11 at age 11. We, the parents found this and worked to show and educate his pediatrician about PANDAS. The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases. But he was a happy ticcer. CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do. We had this thing "licked" after a year of high dose abx. Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp. He feels everyone is "putting him down" or "out to get him". Every interaction is stressful and eventually he would not leave the house. His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal" but to us the signs were invisible - no tics, no repetitions, nothing you could see. He talked to a counselor (no value). We never, ever thought PANDAS. There was no similarity to his previous diagnosis. However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test, he completely fell apart with intrusive thoughts and irrational behavior. Suddenly his dad said "this is completely irrational - it must be PANDAS" The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive. I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it. We're on it now but feel like he has suffered two extra years and we hope we are not too late.
  5. 1 point
    pinkoctober88

    Ketogenic Diet for Tics?

    Ive been researching the connection for the keto diet and tic disorders for a couple years now. I have chronic motor tic syndrome that stemmed from prescribed adderall use in college. Now that ive been keto for a couple years, the relationship is undeniable. I also cut out red40 and most other dyes, sugar, any simple carbs, and some dairy. The results are amazing and my tics are at bay for most of the day. If i have a cheat day,y tics start up immediately and can last for a couple days during my carb hangover.
  6. 1 point
    I have found it profoundly enlightening to read about some of the obsessions and what parents thought were associated to them. I know some of these things are pretty personal, but finding patterns and possible solutions can be very helpful. So, my DD is 10. She was diagnosed with Sensory Processing Disorder when she was about 3. My daughter was adopted at birth from my niece. We believe she was exposed to several drugs during pregnancy, and the father was a heavy user. She is "normal" from all first impressions, but she was obsessive about intense events. Like she might get hit by another child and she would not let it go for months. Then it was things like "a child threw up on the rug" and she would never sit on the rug again. But basically, it was very manageable and I that concerned. We had therapists for her for anything we thought she needed. She did seem to get sick easily. And she got strep, and pneumonia, even the H1N1 (we think all did) she started getting a little worst. She also have a couple of stays in the hospital for UTI's and blockages. She was diagnosed with gastro-paresis was one low doses of amoxicillin for motility from a very young age. Eventually that stopped working. So we went to an antihistamine called cyproheptadine. She is still on it. She has been on antibiotics several times, for ear infections, pneumonia, etc. She had blood work a couple of times and developed a phobia of needles. I had major heart surgery she was about 5 and that might have affected her. With the last time we needed blood work, she had a major panic attack, hyperventilating, etc. Mostly, her major obsession was with getting a fever. She needed me to check her forehead at least 2-4 times an hour, all day, every day. Then it was fear that she would throw up. Every 15 minutes she would say she was going to throw up. She got sick at Applebees about 3 years ago and everyday something reminded her that event. She didn't want to go out to eat because it reminded to her of that. Needless to say, we never went back to Applebees. Going from appointment to another would trigger major anxiety, but once there, she was fine. I started her on a powder probiotic, 5 billion, called Culturelle, about 3 weeks ago. She started having better days, but also somethings got worst. She seemed to get more fearful of others and their germs, but less about her forehead. But, she started playing for friends again. I started her on Renewed Life 30 billion, and her anxiety seemed to almost go away. But her ability to process her frustration also disappeared. One night she physically violent with us, the next day she attacked another student (her niece) in school for not getting out a seat she wanted. My Pro-Kids (Pro- 15) got here the next day and I stopped the Renewed Life and gave her the new Pro-Kids. Everything seemed to just settle and calm. She had a wonderful day. She went to her gymnastic lesson without complaint, she played with her niece, (got annoyed but worked through it) and went to the store with us without complaining. She kept saying how good she felt, her stomach didn't hurt. I began to question about things like, "did she feel spoiled" (a common one), did she feel anxious, (very common), was anything reminding her of Applebees, (very common) and she answered "no" to all it. She checked her forehead once today. Even though I'm pretty excited, I know this stuff is never really over. But, the idea that there is hope is strong with me.
  7. 1 point
    Annieo

    Paleo vs. Ketogenic

    I started eating a paleo diet about five years ago. It is a commitment in that you can't rely on easy, processed foods. Last summer I started eating a ketogenic diet. Both are do-able. The benefit for me is that aches and pains I've had my entire life are gone. The sinus headaches I suffered from almost daily are gone. In other words, the inflammation I experienced for years is gone. I have not tried the diet with my PANDAS child, but because of the way I eat, she eats far more healthfully than most of her peers. Her PANDAS symptoms are currently mild, although I honestly have no idea why. It's probably easier to try a paleo diet at first, and then if you want you can move to ketogenic.
  8. 1 point
    lordchallen

    Extreme behavior

    Maryangela I had my daughter on the "Renewed Life" (I think) and I noticed a couple of interesting things. Like her anxiety seemed to almost disappeared (compared her usual) and I was really excited. I was calling it her "rage" but I could tell it was her inability to cope with frustration. Like I told her "put it away" and she got mad. Then her older sister came and lectured her (I had left) and she got even more mad. All of this followed the school nurse grilling and interrogating her in the hallway. She couldn't process the frustration. She has had a "sensory processing disorder" diagnosis since she was 2. We are constantly trying to help her process things. This might be talking, tossing things, squeezing things, pro-prescriptive exercises, reflexology, etc. She is a good kid. She is very loving, kind, thoughtful, blah, blah, blah. But there times when she gets really mean, but then she feels really bad afterwards. But this last week, I totally see where a stomach imbalance can cause inappropriate behavior. MomWithOCDSon, Thank you so much for all of your insight. I have tried a couple of different probiotics. I am using the Pro-Kids (Pro-15) and she seems like a million bucks. They seemed to work almost instantly. She said she loves her probiotics, she hasn't had stomachache in 2 days. She is good. She is a little moody, but after everything that has happened I find it very acceptable. But not crazy. If she gets upsets with a friends, she just walks away and does something else. I am very excited, I just hope things continue in this trend. Thanks for everything and I will be around for more insight.
  9. 1 point
    bobh

    Can you help me solve this problem?

    I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses. I hope this comment doesn't depress you further, but if so there is still hope. Our child improved dramatically with puberty - though not all do. I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.
  10. 1 point
    stateless

    Possibly PANDAS?

    Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk) eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives. The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.
  11. 1 point
    We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I had taken the energy we were putting into CBT (and then going to the psychiatrist for zoloft, also totally ineffective) and put it into medical treatment (abx, naproxen, steriods etc). Our son would never have gotten as sick as he did had we known sooner (like practically every PANDAS kid). It is very hard to know what to do, but if the antibiotics are not sufficient in bringing back your child (and unfortunately, that appears to be the case quite often) , then I would start pushing for a 5 day steriod burst. If there is a glimmer of hope with that burst, then you know it is not separation anxiety, but brain inflammation and you can pursue more medical treatment options more rapidly. As others above have said, CBT is a very useful tool. Just not for someone in a full flare of PANDAS/PANS. I think CBT can be very helpful after a child has started recovery and parents are trying to nudge them along to be able to do more and more. When we got to that stage, I had a thought along the lines of "oh, so this is what we should have been seeing with all that CBT." And unfortunately it seems CBT is a tool many parents continue to have to use when recovering from future additional flares along the way... Best of luck.
  12. 1 point
    lysia

    Do symptoms change after puberty?

    I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years. I have no significant nor any life debilitating symptoms remaining of OCD whatsoever. The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it. No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries and even regressions are just as any other experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become. (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q, I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty". When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really. BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick mom you are. I'm so SO happy she has you. Just needed to respond. [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery . A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]]. Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.
  13. 1 point
    This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this. Take small steps and try not to show how frustrated you are (hard as this is). It really does improve with time. You won't be at this crisis point for long. Improvement for us happened very gradually. One day at a birthday party I thought how great it was DD went off to dance on her own without holding my hand! Then she sat at the dinner table with her friends and didn't notice I wasn't stood behind her. Went to the toilet on her own without a second thought..... DD overall is 95% better since major episode 2 years ago She still takes prophylaxis for now and she will have minor relapses with viruses etc. But, despite separation anxiety being the one symptom we see decline first when she gets ill, it is nowhere near as debilitating. She just gets more nervous and on high alert for a week or two. No - she's not like her friends quite yet. But she did stay at a friend's for tea for a whole 2 hours last week without me - and didn't want to go home when I turned up to collect her! She was so proud of herself and because it went well for her (i.e. nothing 'bad' happened and mum did come back), she is now primed to do it again soon. She is actually looking forward to the next time. She will just be much older when she does all the independent things like sleepovers at friends. Word of warning though, I have been seeing a therapist to help me cope with PANDAS PTSD and I have discovered how much of an influence I can actually be on my daughter's anxiety. Without realising, I have been just as nervous as her (or worse?) at the thought of her being independent ('oh my god, she couldn't possibly do that.... worry, worry, worry.....people don't understand, that will set her right back'....etc. etc. etc.......) All those thoughts I have because I too am scarred from years of rollercoaster behaviour and trying to prevent disasters. We, as mums, have a duty to protect. This is our second nature and we do so many things we are not aware of. You are now programmed to condition the environment to your DD's needs. It doesn't matter she is getting so much better, fresh in your mind are those awful reminders of worse times. When will it happen again? Be mindful of the fact that we influence our children so much: I didn't know I was holding DD back until a stranger told me. I hope things improve for your family real soon. Hang on in there............


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